One two punch: medical and emotional update

First to the heart, and then to the gut. Last Thursday, undone by the passing of yet another friend, I was given the go ahead to get back on prozac. I’d made it four months without chemical support and the decision to return to an antidepressant was not made lightly. I had become such a cry baby and it was beginning to feel untenable. I may be strong, I may be brave (most of the time) but I suck at sad.

By the weekend, it was clear that the tickle in my chest had bigger plans. Come Sunday I was feeling plenty sick with a chest/sinus infection. On Monday I was at MGH for labs, and asked to see a nurse. I knew I’d need an antibiotic, but the LDK 378 is an occasional challenge for my gastrointestinal track and in December I’d taken a single 750 mg tablet of Levaquin to rather disastrous results. I was concerned about what havoc a full course of antibiotics might wreak.

My sodium was trending low and in anticipation of some GI disturbances we talked about the possibility of an IV boost. She got me a sputum cup for a culture. But then my liver enzymes came back and the levels were significantly higher than they had been a week ago. My lactic dehydrogenase (LDH), an indicator of inflammation, was also elevated.

Game plan changed. The degree of liver enzyme elevation I had (greater than ten times normal) constitutes a grade 3 event in a clinical trial. Dr. Shaw joined us and explained that I would need to go off drug, at least until my enzymes came down.

It’s called a drug holiday, but not as much fun as it sounds.

I am on a lower than my usual dose of Levaquin (500mg) for the chest and sinus infection. There is a chance that the addition of fluoxetine (prozac) mitigated the dramatic fluctuation. The thought was to stay on prozac and see if my levels came down. On Tuesday, really feeling lousy, my appetite nowhere to be found, I decided that I would just stop taking it. If a boat is taking on water, you throw everything that is not essential over the side.

Today I had lab work done locally. My hope is that the levels are receding; if they should come down enough I could start back on trial in a week. If they haven’t, than it may be that something other than the trial drug or the prozac is causing the elevation. Had I stayed on the prozac, it obviously would have made it easier to rule out the trial drug, but I just wasn’t willing to do that. Next Tuesday I have more labs, a CT scan and a previously unscheduled chat with Dr. Shaw to see where we’re at with all this.

In the meantime, I’m resting a lot, eating what I can (David is a great pusher of food) and crossing my fingers that this is just a bump in the road.

27 responses to “One two punch: medical and emotional update”

Hi Linnea, I just want to say that you have to keep going. I know that your moor could be up and down…and it is normal. You are a fighter and such an amazing woman!!!!! I don’t have all the words I need to help you, just thinking of you… Today, it has been a very good day for my best friend, her scan shows a significant decreased for the tumor. I hope you will feel better. Elisabeth

Linnea, just want you to know that SO many are pulling for you! ‘Drug holiday’ does sound fun; wish it was better news. Dwell on the ‘holiday’ portion and feel better soon! I’m glad you have a ‘food pushing’ husband! 🙂 Blessings, Carol Ann

HI Linnea,
Haven’t commented in quite a while – but you are always in my thoughts and I am constantly sending positive energy your way!!! Wishing you well my friend….hope you can get some rest and drink plenty of water!
Karen

Linnea, my husband is on a drug holiday too. Its been a week, he has been taking Xalkori for 2 years now, but he’s having terrible trouble with his balance and he can’t see clearly at all anymore, can’t read or see much on the tv. Waiting to see if its the drug or something else. It isn’t much of a holiday, I would agree with you whole heartedly.

Dear Linnea, Thinking of you here across the pond – as I am sure many are across the world. Many ups and downs on your journey, but I’m very sure Dr Shaw will guide you through this wobble. Enjoy the rest, food and ‘holiday’. Much love, David x

Linnea, We are all crossing our fingers for you too. I’m sure this will be turn out to be one of the infinite number of hurdles that you have experienced and will experience. It goes with the territory.
Wow, a cook living in the house..do you get to request what you want or does David stick to a menu??
Anyhow, much love and good thoughts sent your way. I think we all suck at sad, and that also goes with the territory.
With much fondness, Cheryl

Cheryl, there was a time where I did most of the cooking, but David has always enjoyed the process–much more than I do. He works from home now and has pretty much taken over the kitchen. I couldn’t be more pleased. And thanks for those crossed fingers.

HI Linnea…..I was so sorry to read your recent posting. I want you to know I am sending you all the positive chi I can – I know your courage and strength will get you through this “punch” also. I’m so glad to read about all the support you have from your husband (and friends). It’s clear you are surrounded by love, which I believe can heal miraculously.
love, Laurie

Hi Linnea. I have never commented here before, but I’ve been following your blog for a few months now. My mom was diagnosed with NSCLC (Pancoast) in 2009 and we’ve been fighting it ever since. Your words have often been my little ray of hope on those horrible days when things get a little tougher than usual. I was so sorry to hear about your temporary setback … I’m sending you positive thoughts & well wishes all the way from South Africa.